Devoted protection: How parents of children with severe learning disabilities manage risks

This paper aims to explore the risk perceptions of parents caring for children who have severe learning disabilities and complex medical needs. The paper draws upon a qualitative study involving 20 parents, mostly mothers. The findings document the demanding care requirements which these parents had to meet. Parents viewed their role in terms of devoted vocation rather than meeting a burdensome obligation. This dedication interacted with heightened risk consciousness to fuel a sense of undelimited responsibility. Parents tended not to place sectoral or temporal boundaries around their responsibility for the care of their child. Their approach was mediated by a prevailing but not universal mistrust of the caring capabilities of others. Although parents sometimes temporarily transferred caring duties to others, they usually retained a sense of anxious responsibility for such care, supervising or auditing the activities of other carers rather than delegating risk ownership. Trust was conferred on others only when they had demonstrated a good record of accomplishment of care for the child, and were seen to have acquired detailed idiographic understanding of their individual complex needs. The findings can be understood in relation to a broader societal context of individualisation of responsibility.